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Life as a family caregiver of patients with cancer can be emotionally and practically challenging. Little is known of whether home-based chemotherapy of patients with acute myeloid leukemia places excessive pressure on family caregivers or decreases their burden. To explore the significance of home-based portable pump chemotherapy for family caregivers of patients newly diagnosed with acute myeloid leukemia.An explorative qualitative design using dyadic and individual semi-structured interviews with family caregivers and patients were followed by thematic analysis. Purposive sampling was used regarding gender, age, and distance to the hospital. At each interview, we were teams of one researcher and one clinical nurse specialist from the hematology department. The derived themes were predominately descriptive, based on patterns in the data.Five couples participated, (aged 39-72 years). Three themes were identified: 1) Going home. 2) Responsibilities due to the pump and leukopenia. 3) The shadow of the life-threatening disease. The pump was a minor concern to the family caregivers seen in the light of the life-threatening disease. Home-based treatment was a relief but the responsibilities due to leukopenia demanded the caregivers' resources.The fear of losing the patient and the burdens of dealing with leukopenia suppressed the family caregivers' sense of load due to the portable pump treatment. The findings underline the importance of healthcare professionals recognizing family caregivers' sense of burden and prioritizing sufficient support and education in order to enhance the everyday life of both patient and family caregiver.

Previous research has shown social inequality in type 2 diabetes prevalence and that socially vulnerable type 2 diabetes patients benefit less than average from health services. Based on ethnographic fieldwork carried out between February 2017 and March 2018 in a Danish specialized outpatient clinic, this article focuses on patient work among socially vulnerable type 2 diabetes patients. Through attending to the border zone between formal health care and self-care, we show that patients do a lot of work requiring skills, resources, and initiative, to access and benefit from formal care. This work is complex and implicit in the organization of care. Patients’ social situations, especially their employment situation, complicate getting patient work done. Attending to patient work and implicit tasks in care organization may help us to see how social inequality in type 2 diabetes outcomes develops, and may be combated.

Background Type 2 diabetes cluster in lower social groups and people with type 2 diabetes from lower social groups experience more complications, benefit less from health services and live shorter lives than people with type 2 diabetes from higher social groups. Different logics govern diabetes care and potentially influence the possibility of socially vulnerable type 2 diabetes patients to access and benefit from health services. In order to understand which practice and underlying logic enable socially vulnerable type 2 diabetes patients to access and benefit from diabetes care we aim to describe what professionals at a specialized diabetes clinic do to adjust services to patient’s needs and make the tasks involved in diabetes care doable for socially vulnerable patients and how this work is embedded in an organizational and moral context. Methods Ethnographic fieldwork combining participant observation and interviews was carried out between February 2017 and March 2018 in a specialized diabetes clinic located in a socially deprived area in the capital region of Denmark. Sixteen patients (9 male, 7 female, aged 35-73 years) and 12 professionals (7 doctors, 4 nurses, 1 secretary) participated in the study. We used Annemarie Mol’s concept of “the logic of care” to guide our analysis. Results Our analysis shows that the logic of care and the care practices in this clinic are characterized by a needs-based approach to treatment involving adjustment of services (permeability, timing, and content) and seeing the patient as a person with many needs. Throughout our description of selected care practices, we both characterize how health professionals practice this particular logic of care and the organizational and normative conditions that this logic is entangled with. Conclusions Practicing diabetes care based on patients’ needs involves individualization, something often described as an element of patient centred care. Our study shows that this ideal of individualization and adjustment of treatment is possible in practice. Organizational flexibility and an organizational culture that values patient needs enable needs-based care. In order for socially vulnerable type 2 diabetes patients to benefit from health services it is necessary to create conditions under which professionals can attend to these patients’ multiple and complex needs. Adjusting care to these needs demand a variety of professional efforts some of which are hardly predictable or standardisable.

Being a patient in need of specialized palliative during the COVID-19 pandemic is challenging. Governments around the world have reduced the available health care services as well as restricted in-...

Aim To investigate approaches among healthcare providers (HCPs) that support or hinder person-centredness in group-based diabetes education programmes targeting persons with type 2 diabetes. Methods Ethnographic fieldwork in a municipal and a hospital setting in Denmark. The two programmes included 21 participants and 10 HCPs and were observed over 5 weeks. Additionally, 10 in-depth semi-structured interviews were conducted with patients (n = 7) and HCPs (n = 3). Data were analysed using systematic text condensation. Results Hindering approaches included a teacher-centred focus on delivering disease-specific information. Communication was dialog based, but HCPs primarily asked closed-ended questions with one correct answer. Additional hindering approaches included ignoring participants with suboptimal health behaviours and a tendency to moralize that resulted in feelings of guilt among participants. Supporting approaches included letting participants set the agenda using broad, open-ended questions. Discussion Healthcare providers are often socialized into a biomedical approach and trained to be experts. However, person-centredness involves redefined roles and responsibilities. Applying person-centredness in practice requires continuous training and supervision, but HCPs often have minimum support for developing person-centred communication skills. Techniques based on motivational communication, psychosocial methods and facilitating group processes are effective person-centred approaches in a group context. Conclusion Teacher-centredness undermined person-centredness because HCPs primarily delivered disease-specific recommendations, leading to biomedical information overload for participants.

Awareness of young carers' experiences and needs is low on governmental and societal levels in Denmark. This article presents findings from the first evaluation of a Danish respite programme, the Buddy Programme, which aims to provide support to young carers aged 5-15 years who experience serious, chronic or mental health problems and/or death of a parent or sibling. Over a four-six month period, volunteer students from University College Copenhagen offer young carers the opportunity of respite through participating in ordinary activities such as play and sports. In 2017-2018, based on a child-centred approach, we conducted a qualitative study with interviews focusing on how the Buddy programme affected the children. The interviews took place at programme start, halfway through, and after completion with 22 children and 21 parents, as well as single interviews with 20 Buddies assigned to families after completion. Three main themes were identified: (1) the Buddy programme as an activity, (2) how the Buddy Programme affected the children and (3) ending the Buddy programme and wanting to continue the friendship. Our findings emphasise the importance of fun and cosy activities that provide children with respite from the serious concerns that otherwise fill the lives of young carers. Being with a Buddy created a free space, allowing children to play undisturbed and to temporarily keep concerns and a guilty conscience at a distance. By offering friendship, Buddies provided opportunities for young carers to feel special, be seen, acknowledged and taken seriously as a child with valid and specific needs and interests. Our findings may help increase awareness of the needs and interests of young carers on governmental and societal levels.

Background Healthcare professionals’ person-centered communication skills are pivotal for delivering successful diabetes education. Many healthcare professionals favor person-centeredness as a concept, but implementation in practice remains challenging. Today, programs have often a fixed curriculum dominated by biomedical issues. Most person-centered methods are developed targeting individual consultations, although group-based programs are a widespread and efficient method of support. Person-centeredness in group-based programs requires a change in practice towards addressing biopsychosocial issues and facilitating group processes. The objective of this study was to explore how healthcare professionals implement new approaches to facilitate group-based, person-centered diabetes education targeting people with type 2 diabetes. Methods The study was guided by action research and divided into three studies: investigation, development, and pilot using a variety of qualitative methods. In the first study; observations across five settings were conducted. Forty-nine group participants and 13 professionals took part; the focus was to investigate approaches that supported or hindered person-centeredness in groups. Observations were supplemented by interviews (n = 12) and two focus groups (n = 16) with group participants, as well as interviews (n = 5) with professionals. In the second study; 14 professionals collaborated in two workshops to develop new approaches. In the third study, new approaches were pilot-tested using observations in three settings. Twenty-five group participants and five professionals took part. The analysis of the pilot test led to the final workshop where six professionals took part. Results Implementation was characterized by three categories. Some professionals chose not to implement the methods because they conflicted with their practice relying on the biomedical model. Other incorporated some approaches but was unable to structure the process, leaving participants uncertain about the aim. Finally, one setting succeeded with implementation, tailoring content and processes to group participants’ needs. Conclusion The use of action research created context-sensitive approaches and increased professionals’ readiness to implement. More attention should be paid to systematic training of professionals. Training should be structured stepwise incorporating techniques directed towards existing skills including ample time to train and reiterate skills. Electronic supplementary material The online version of this article (10.1186/s12913-019-4183-1) contains supplementary material, which is available to authorized users.

I dette nummer af Tidsskrift for Forskning i Sygdom og Samfund sætter vi fokus på børn; fra de for tidligt fødte til den unge som er på vej ind i et gryende voksenliv. Hvordan børns sygdom påvirker hverdagsliv, mening, identitet, relationer og forældreskab, samt hvilken betydning det får i velfærdsstaten synes at hænge sammen med en stadig mere udbredt fortælling om barndom og ungdom som sårbare livsstadier, der afspejles i et velfærdsstatsligt fokus på det ´gode´ børneliv. Vi undersøger i dette særnummer børns sundhed, sygdom og erfaringer - altså hvordan børns sygdom og sundhed defineres, optræder, forstås og håndteres af børnene selv og i samspil med forældre og omsorgspersoner, af sundhedsvæsenet og af det omkringliggende samfund. Vi har også fokus på børn som slægtninge – eller deres transformation til pårørende – og undersøger, hvad det betyder for børn at leve med en syg forælder. De sociale og institutionelle praksisser, der omgiver børns sundhed og sygdom, og de værdier og normer, der er på spil angående børns sygdom og sundhed, står centralt i dette særnummer.

Childhood sexual abuse is a severe problem worldwide. Childhood sexual abuse can be detrimental to children and their abilities to cope with and communicate in their subsequent adult intimate relationships. The aim of this review was to generate and summarize knowledge about how childhood sexual abuse manifests in adult intimate relationships so healthcare professionals can incorporate this knowledge into treatment and care. A scoping review methodology was selected because it supports examination of the extent, range, and nature of research activity. A content analysis of the studies included in this review led to three thematic categories of challenges in adult intimate relationships after childhood sexual abuse: (a) relationship satisfaction, (b) sexual satisfaction, and (c) communication and trust.

Healthcare professionals’ (HCPs) skills in person-centeredness are pivotal for delivering successful diabetes self-management education and support (DSMES). Many HCPs favor person-centered methods as a concept but implementation in practice remains challenging. The main focus is on information about diabetes, complications, medications, diet and exercise. This study explored how HCPs implement new methods to facilitate person-centered DSMES in groups. The study was guided by action research and divided into three phases (investigation, action, and pilot) using a variety of qualitative methods. In step one, observations were conducted across five educational settings including 49 persons with T2DM and 13 HCPs to explore HCPs’ person-centered skills. In step two, 14 HCPs collaborated in two workshops to develop new methods e.g., exercises and dialog tools to prompt discussions about psychosocial aspects of diabetes and to fit educational needs to both the individual and the group. In step three, we pilot-tested the methods using observations in three settings and interviewed 5 HCPs and 27 participants with T2DM. A final workshop was conducted to evaluate the methods. Systematic text condensation and hermeneutic analysis were used to analyze data. Implementation of the methods was characterized by three categories. Some HCPs chose not to implement the methods because they conflicted with their usual practice relying on the biomedical model. Other HCPs agreed with the concept but was unable to structure the process, leaving participants uncertain about the aim. Finally, some HCPs succeeded with implementation promoting participants’ needs, reflections and discussions in groups. Implementing methods to deliver person-centeredness is complex and requires systematic training of HCPs. The training should be structured stepwise incorporating techniques directed towards existing skills including ample time to train and reiterate skills. Disclosure V. Stenov: None. G. Wind: None. M. Vallis: Speaker's Bureau; Self; Novo Nordisk A/S. Advisory Panel; Self; Novo Nordisk Inc.. Speaker''s Bureau; Self; AbbVie Inc.. Advisory Panel; Self; Valeant Pharmaceuticals International, Inc.. Speaker's Bureau; Self; Merck & Co., Inc.. Advisory Panel; Self; Sanofi. Speaker's Bureau; Self; Sanofi. S. Reventlow: None. N.F. Hempler: None.

Background Healthcare professionals’ person-centered communication skills are pivotal for successful group-based diabetes education. However, healthcare professionals are often insufficiently equipped to facilitate person-centeredness and many have never received post-graduate training. Currently, assessing professionals’ skills in conducting group-based, person-centered diabetes education primarily focus on experts measuring and coding skills on various scales. However, learner-centered approaches such as adequate self-reflective tools have been shown to emphasize professional autonomy and promote engagement. The aim of this study was to explore the potential of a self-assessment tool to identify healthcare professionals’ strengths and areas in need of professional development to aid effective facilitation of group-based, person-centered diabetes education. Methods The study entails of two components: 1) Field observations of five different educational settings including 49 persons with diabetes and 13 healthcare professionals, followed by interviews with 5 healthcare professionals and 28 persons with type 2 diabetes. 2) One professional development workshop involving 14 healthcare professionals. Healthcare professionals were asked to assess their person-centered communication skills using a self-assessment tool based on challenges and skills related to four educator roles: Embracer, Facilitator, Translator, and Initiator. Data were analyzed by hermeneutic analysis. Theories derived from theoretical model ‘The Health Education Juggler’ and techniques from ‘Motivational Interviewing in Groups’ were used as a framework to analyze data. Subsequently, the analysis from the field notes and interview transcript were compared with healthcare professionals’ self-assessments of strengths and areas in need to effectively facilitate group-based, person-centered diabetes education. Results Healthcare professionals self-assessed the Translator and the Embracer to be the two most skilled roles whereas the Facilitator and the Initiator were identified to be the most challenged roles. Self-assessments corresponded to observations of professional skills in educational programs and were confirmed in the interviews. Conclusion Healthcare professionals self-assessed the same professional skills as observed in practice. Thus, a tool to self-assess professional skills in facilitating group-based diabetes education seems to be useful as a starting point to promote self-reflections and identification of healthcare professionals’ strengths and areas of need of professional development. Electronic supplementary material The online version of this article (10.1186/s12909-017-1003-3) contains supplementary material, which is available to authorized users.

Antropologiske studier af diagnoser har fra mange forskellige vinkler diskuteret og belyst, hvilken social betydning det kan have at være diagnosticeret med en bestemt diagnose – og, tilsvarende, hvad det kan betyde at mangle en diagnose. Bodily Distress Syndrome (BDS) er en ny forskningsdiagnose, der endnu ikke figurerer i de internationale diagnosemanualer, og som i en vis forstand befinder sig i krydsfeltet mellem diagnose og ’ikke-diagnose’.På baggrund af et etnografisk feltarbejde i Danmark udforsker vi i artiklen, hvilke forhandlingsmuligheder der for mennesker med Bodily Distress Syndrome knytter sig til at blive diagnosticeret med en forskningsdiagnose. Med fokus på diagnosens tilblivelsesfase viser vi, at den særlige ikke-synlighed, der ligger indlejret i BDS-diagnosen, i visse sammenhænge er forbundet med bestemte muligheder for mennesker med BDS. Ud fra en teoretisk forståelse af fravær som ejendel, argumenterer vi for, at ikke-synligheden åbner op for et rum for forhandling om diagnosens indholdsmæssige beskaffenhed, og at mennesker med BDS – i dette forhandlingsrum – kan tage medejerskab over tilblivelsen og afgrænsningen af BDS som diagnose og fænomen.A room for negotiation – On absence and flexibility in the becoming of a diagnosisAnthropological studies of diagnoses have from several perspectives discussed and shed light on the social meaning and implication of having or not having a diagnosis. Bodily Distress Syndrome (BDS) is a new research diagnosis that does not yet appear in WHO’s International Classification of Diseases. In that sense BDS is situated in a position of structural ambiguity, simultaneously being and not being a real diagnosis.Based on ethnographic fieldwork in Denmark this article examines the possibilities of negotiation connected to being diagnosed with a research diagnosis. Focusing on the very becoming of BDS the article suggests that the absence in the diagnosis of clear pathological findings offers certain possibilities to people recently diagnosed with BDS. Leaning on a theoretical understanding of absence as a specific kind of possession, we argue that the absence opens up a room for negotiation of the content of the diagnosis, thereby offering people with BDS a shared ownership of the becoming and elaboration of the phenomenon BDS.

In this paper I discuss the possibilities and limitations of the ethnographer participating in the different on-going activities and events in highly specialised healthcare systems. The concept of participant observation is based on a number of assumptions, particularly that the ethnographer will become one of ‘them’ to be able to follow the steps belonging to the accepted ethnographic research practice of doing fieldwork. The character of fieldwork in highly specialised healthcare systems does not fit well with this assumption. I suggest that we need to rethink the concept of participant observation and I propose negotiated interactive observation as a more appropriate way to describe ethnographic fieldwork in a setting such as the hospital or the clinic.

We examined patients with osteoporosis implementation of recommendations regarding a bone healthy lifestyle after the patients attended multifaceted osteoporosis group education (GE). Our findings suggest that GE can support and influence patients’ transfer of preventive actions. Still patients are challenged by concerns related to social roles and physical ability. We investigated if and how patients implemented knowledge from attending multifaceted osteoporosis GE in their daily lives. An interpretive description design using ethnographic field work was applied. In all 14 women and three men diagnosed with osteoporosis who attended multifaceted GE at a Danish hospital participated. Data consisted of field work and individual interviews in the participants’ everyday environment after completion of GE. After attending multifaceted GE, participants experienced increased attention to and reflected more on how to implement osteoporosis preventive actions or activities. Participants who felt confident on how to act and experienced a clear need and motivation, or who could make the preventive activity into a social event, demonstrated an increased implementation of the preventive activity. On the contrary, attending GE was in some cases not sufficient to overcome social and physical concerns, or to eliminate uncertainty about recommendations or to make participants identify with the osteoporosis diagnosis, which thus impeded implementation of a bone healthy lifestyle. Attending multifaceted GE can support and influence participants’ transfer of preventive actions into daily life. Being aware of how concerns about valued social roles and physical ability interfere with the implementation of medical recommendations obviously needs attention during GE.

The characteristics and effectiveness of osteoporosis multifaceted group education were determined from a systematic review of international literature. Findings showed that these educational programmes may be beneficial in a variety of important factors for the prevention, treatment and management of osteoporosis. This systematic review investigated quantitative studies on osteoporosis multifaceted group education. The purpose was to investigate the characteristics as well as the effectiveness of this form of osteoporosis patient education. Preferred Reporting Items for Systematic Reviews and Meta-Analyses guided this systematic review. Relevant databases were searched until January 2013. Seven studies published between 1993 and 2011 including osteoporosis patients with or without fractures were found. The multifaceted educational programmes all consisted of three overall themes: (1) Knowledge of osteoporosis, (2) Medication and diet and (3) Exercise, but with different foci across the studies. Overall, 24 outcome measures representing six topics were applied: (1) Health-related quality of life, (2) Psychosocial function, (3) Pain, (4) Physical activity, (5) Knowledge and (6) Medication and diet. The review showed that multifaceted osteoporosis group education can increase the patients' knowledge of osteoporosis as well as their health-related quality of life, physical activity and psychosocial functioning. It has the potential to increase adherence to both pharmacological and non-pharmacological treatments. Multifaceted group education may have a positive impact on the patients' ability to engage in preventing and managing osteoporosis. Further research directed towards the complexity of multifaceted group education is needed. In addition, research investigating the educational needs of specific groups of osteoporotic patients is required.

Mental health services strive to implement a recovery-oriented approach to rehabilitation. Little is known about service users' perception of the recovery approach. The aim is to explore the service user's perspectives on facilitators and barriers associated with recovery. Twelve residents living in supported housing services are interviewed. The analysis is guided by a phenomenological-hermeneutic approach and the interpretation involves theories from critical theory, sociology, and learning. Learning, social relations, and willpower are identified as having an impact on recovery. Stigmatization and social barriers occurred. Social relations to peer residents and staff were reported as potentially having a positive and negative impact on recovery. Studies have explored the user's perspectives on recovery but this study contributes with knowledge on how recovery-oriented services have an impact on recovery.

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PURPOSE: The aim of this paper is to explore how users of electric wheelchairs experience their everyday life and how their electric wheelchairs influence their daily occupation. Occupation is defined as a personalized dynamic interaction between person, task and environment, and implies the value and meaning attached.METHOD: Nine semi-structured interviews were conducted with experienced electric wheelchair users. ValMo was used as the theoretical framework for both interviewing and the analysis. The transcribed interviews were analysed using thematic analysis.RESULTS: Findings revealed key elements in electric wheelchair users' experience of how the use of a wheelchair influences everyday life and occupation. Four central themes emerged from the participants' experiences 1) The functionality of the wheelchair, 2) The wheelchair as an extension of the body, 3) The wheelchair and social life, and 4) The wheelchair and identity issues. The themes were interrelated and show how all levels of occupation were influenced both in a positive and negative way, and how it affected identity.CONCLUSIONS: It is essential that professionals working with electric wheelchair users are aware of how all levels of occupation and identity are influenced by using a wheelchair. This will assist professionals in supporting the users living an autonomous and meaningful life.